This study is based on a key informant data collection design with a convenience sample of parents identified by practices recognized as PCMHs by the National Committee for Quality Assurance (NCQA) before 2010 and an additional sample of parent-leaders identified by directors at consumer organizations. Data were collected between November 2012 and January 2013, with the goal of capturing information about parents' expectations of medical home models and experiences with medical homes (Appendix A includes a summary of the 2008 NCQA medial home standards and elements). The research team conducted a total of 15 individual discussions with parents of CSHCN from two groups.
The first group included nine parents of CSHCN. Each of these parents had at least one child with a special health care need who currently received primary care at a practice recognized as an NCQA Level 3 PCMH. We refer to these individuals as "parents" or as "consumer parents." The children of these nine parents received care from six different physicians at four PCMHs. Three practices were in Colorado and served five of the children in this study. One practice was in Texas and served four of the children in this study. We spoke to parents in this group primarily because we wanted to learn about parents' preferences and values related to their children's primary care.
The second group included six parents of matured CSHCN. Each parent in this group had become a leader in an advocacy or governmental organization related to CSHCN. We refer to these individuals as "parent-leaders." This group included three parents in Colorado and three in Texas. In addition to raising children with special needs, five of the parents held leadership positions in advocacy organizations, and one worked for a state governmental agency. We spoke to these parents to learn about their perspectives on programmatic and policy issues related to medical homes.